A family member has been suffering from some pretty bad gastric issues for almost three months. After waiting and waiting to see an allergist—seriously, the wait was nearly three months—the diagnosis is no food allergies but maybe a food absorption issue. So now a gastrointestinal specialist is in the picture. Whatever is wrong is almost certain to require pretty big changes in that family’s eating plans. That’s the way with chronic and/or auto immune diseases.
The current situation strongly reminds me of when my older boy was diagnosed with type 1 diabetes, and all those emotions I felt then have just come roaring back.*
I remember the sense of loss knowing that my son’s life was completely and irrevocably changed because his pancreas crapped out on him. I knew he would need to test his blood multiple times daily for the rest of his life, that he could never just sit down and binge on something tasty just for the hell of it, not without repercussions that could include dying, that he would be in more danger than most if he chose to get drunk, and that because of his disease, certain careers were never ever going to be an option for him.
I did not know how to be a mother to someone with a chronic disease. I feared that I might accidently kill my child because I wasn’t paying enough attention to his well-being. I felt tremendous guilt because he’d clearly had the disease and attendant symptoms for several months before his blood sugar levels climbed enough that he was no longer able to keep food down or even talk all that rationally. I struggled with learning how to cook for someone with diabetes, how to track all those food exchanges and count calories, fat, sugar and protein, how to test my son’s blood and give him an insulin shot. Mostly I remember how much I did not want to do any of that. I wanted him to be healthy, normal and disease free.
The end of that story, of course, is that he wasn’t disease-free and barring some amazing breakthroughs in medicine, he never will be. That may be the case for our family member.
I’ve walked where his mother is walking now, and I wouldn’t wish this on her in a million years. I wish now (as I wished when my boy was diagnosed) that I could have the disease instead. I know that’s not possible, but I wish it still with all my heart.
* Please don’t think I’m saying that it’s harder to be the family member of someone with a chronic disease. I don’t think that at all. Clearly, having the disease is harder.